Monday, April 24, 2017
With my chemo treatments coming EVERY week now, I realize my posts may become shorter and pithier as I try and describe my various feelings and experiences. Much of this time: emotions, side effects, etc., have become routine – mundane almost – in their regularity and familiarity. Although, I’m not immune to the abnormal reaction here or there (as you will read below) – my goal is to stay as boring and “average’ as possible through these next 10 weeks.
On the more "exciting" side, I have developed an allergic reaction from the new chemo drug – Taxol. It’s is a delayed one – it appeared 3 days post treatment during round one. A torso rash – looks like I have a pretty bad sunburn and it itches. Worried the bad reaction would keep me from round two, I was persistent to have my oncologist order higher doses of anti-histamines and promise that she’d come up with a plan for round two.
She did. Higher doses of steroids, along with anti-histamines to try and keep the allergic reaction at bay for round two. So far, it has worked. She also is in discussions with my insurance company to get approval to use an alternative drug to Taxol – Abraxane – which does not have the same adverse side effects as Taxol. The insurance company initially has DENIED her request - bastards. But neither of us is giving up. She has appealed and I have engaged assistance on my end to appeal as the “insured”. Anyone thinking this gal is just gonna take a “no” for an answer now, is sadly mistaken. And while I don’t like the idea of being hyped up on mega steroids for the next ten weeks – and my doctor isn’t thrilled about this either due to possible long-term effects - if I have to do so in order to get thru this, I will. Stay tuned for more on this one……
I received the results of my exhaustive genetic testing last week. As you recall, I was diagnosed with “triple negative" breast cancer. Approximately 10-20% of all breast cancers are diagnosed as triple negative. The triple negative refers to the three known “breast cancer receptors”: 1) estrogen 2) progesterone and 3) HER2. I did not test positive for any of these known receptors. Therefore, unlike patients who are positive to any or all of these receptors - drugs can be given to block the receptors as a course of treatment - the only course of treatment for me is chemotherapy.
Before testing, I was convinced I would find signs of why I have cancer – perhaps my genes would tell the story. Heredity. Perhaps the BRCA1 or BRCA2 gene. I almost hoped for a positive outcome in some ways just so that I would have some answers. But no. I tested negative for the entire exhaustive breast and gynecological genetic panels. A whole slew of genetic patterns examined for any sign of mutations, weirdness, strangeness….nothing.
As so here we are. I have cancer. No one knows why. There’s no known reason for any of it. What am I to do with that? I’m a person who likes things tied in bows. I search for the logistical, level-headed, reasonable answer for things. I helps to settle my mind. Gives me direction. A stated purpose for jotting a course. Instead, nothing. I may never know why I have cancer or if it will ever return. Because I don’t know what caused it. It keeps me up some nights. My mind races to find answers that just aren’t there.
Ten weeks to go in my chemotherapy. Seems like a long time to go – through June if I stay healthy and have no issues. To help the time go by, Liz and I have had several visitors stay with us over the course of my treatment to date. Along my brother (who remains my rock), and sisters-in-law (who planted an azalea garden for me!),All of this has made a world of difference in my staying positive and forward thinking to when this ordeal is over and I’m once again cancer-free. It is a gift I cannot repay. Thank you.
Posted by JJB at 1:03 PM
Tuesday, April 18, 2017
I started my second round of chemo last Thursday. Twelve straight weeks of chemo. Utilizing a different drug than the first round of four treatments which were very other week. Daunting to think I have to go to the chemo room every week when it took me two weeks to feel half way human during the first round. But I'm told this next round is less stressful on your body: little to no nausea but fatigue and the threat of neuropathy (tingling of the hands and feet that unchecked could be permanent), along with the possibility of allergic reaction to the drug, on top of mind for the next 12 weeks.
My anxiety was made less having my brother in town for the week. He calms me and mows the yard - what more could you ask for.
My new chemotherapy drug is Taxol. Taxol is a member of chemotherapy drugs called plant alkaloids. Taxol is made from the bark of the Pacific Yew tree, who knew? And it works by inhibiting the dividing and replicating of fast-growing cells. As you will recall, cancer cells are hyper-fast dividing, thus are growing outta control.
The day of my chemo is always an apprehensive one for me. Just one rung higher than scared I'd say. I'm convinced this shit they are dripping into me is killing the cancer and saving my life, but knowing I'm going to chemo conjures up mixed feelings and emotions I try my best to keep at bay. And while I never want to "get use" to this, there was a routine, albeit a miserable one, created after the first eight weeks. Now with this new drug, comes new side effects, and a new routine (how long will I feel like shit, will I be nauseous, etc.).
My first concern was having an allergic reaction to this new drug. My worst nightmare (ok not my worst nightmare - cancer, hello?) but certainly a concern. The nurses - fully aware of this possibility- begin the transfusion of Taxol slowly. If you don't show any reaction, they turn up the volume. Thankfully, I breezed thru the ordeal and with the new drug on board and we headed for home.
Friday I felt almost 100%. No nausea, plenty of energy, ready to go! I had a good day hanging with my brother. We all went out for a Mexican dinner (Jeff had a margarita – I looked on with sadness). I couldn’t believe how good I felt! Saturday I woke up tired and sluggish. As the premeds of Thursday wore off, I became more and more tired, a bit depressed even. Poor Liz. She’s doing all she can to keep our home functioning as “normal” as possible and then I begin to break down. She’s a trooper at keeping me (and herself) going. Sunday was god-awful. I could barely move around. I’ve never experienced fatigue like that since Mt Everest (and that was due to the lack of oxygen in the air). I feared “this” would be my new normal for the next 12 weeks. Jesus.
Then Monday rolled around. Time to return to work. And my energy came back, along with an itchy rash. An apparent side-effect of the chemo. After a quick call to my doctor’s office, I’m on a course of anti-histamines until Thursday – when I return for another round of chemo. I sure hope the rash doesn’t prevent me from having my next treatment. Hard to bare delaying my 12 weeks in any way. I hoping she will pump me full of additional drugs to ward it off. More drugs. Ugh. I’m like a walking medicine cabinet. While I’ve been able to put away the steroids and the anti-nausea meds necessary to get through the first round of chemo, I have replaced them with a more holistic regimen of vitamin B-6, B-12, and alpha-Lipoic acid supplements, along with weekly acupuncture – all centered around battling fatigue and any neuropathy symptoms.
Gawd. This is definitely a marathon. And not one I like participating in. I’m tired of feeling “off”, I’m tired of worrying “what if this doesn’t work” and “what if it comes back”, and I’m tired of relying on family and friends to do the most mundane tasks. However, I have gained a lot thru this journey. Seeing and hearing from old friends who I haven’t connected with in years has been priceless. Experiencing first-hand the beauty of human kindness and selflessness that reminds me that despite the ugliness of Cancer, the world is inherently generous and good. Thank you all for this lesson – it is one I will keep with me for the rest of my life.
Posted by JJB at 1:39 PM
Wednesday, April 5, 2017
So it seems I've raced up to and over the "big round 4" milestone! I have a few days - maybe a week of feeling relatively shitty but all in all, I have made it through what we know as the toughest of my chemotherapy treatments. Phew! (She says with great hesitancy for what’s about to commence: 12 straight weeks of chemo.)
The team had the routine of this circus down by the time round 4 appeared. Get to the oncologist’s office, sign in. Tell the front desk that I'm headed back to the "chemo room" to get my blood drawn and the testing underway (since this takes about 20 minutes) and then go in to see the doc where she'll poke around and listen to my questions and apprehensions. She's a good listener. Liz and I try and make a list ahead of time of questions to ask about what's going on with me plus any questions about next steps, etc. Back to the "chemo room", where the IV is inserted into my mediport and the games begin. Two and a half hours later, I’ve watched a couple of episodes of “The Americans”, and I’m all pumped up with those lovely poisons that are saving my life and we head home.
A routine. But not a routine I wish to get too comfortable with. I still long for the day my hair begins to grow back, the nausea is in the rear view mirror, and my energy returns. I keep focused on the calendar and the countdown to when this nightmare is over for me. For the rest of my life I will be a “cancer survivor”. Always a bit more worried and conscious of cancer than the “normal” gal. Always concerned Congress and the Administration will get rid of the "pre-existing conditions" safety net as they fuck with the ACA. Oh, how I hate that. But this is what life dealt me. And like everyone else, I’m gonna attempt to fly through the bumpy parts as quickly and smoothly as possible – albeit a bit more bumpy than I would have chosen for myself.
This milestone also marked my return to the surgeon for another ultrasound and glimpse of whether all this shit is making any difference on my tumor. I’ve talked in high regard for my surgeon in past posts. Still feel this way about her. She’s self-assured, ex-Army surgeon, a bit on the quirky side, and absolutely confident cancer will be eradicated from my body. She’s also the one who will cut off my boobs and forever change this one and only body I possess, so having confidence in her is kinda key!
Sitting with her can make your head spin a bit. She talks fast, works fast, and yet has the patience to ensure I’ve asked every single question Liz and I have written down. As she’s performing the ultrasound she asks me what I think. I tell her that I’m not going to “jinx” it by saying anything out loud. But personally, deep down I feel its working.
The result of the ultrasound is quite encouraging. Again, I’m not sure how “excited” to be about all this, but it is encouraging. My tumor has reacted quite positively to the chemo and for now, that’s wonderful news. It could have been the opposite – no reaction what so ever - so I’ll take whatever “positive” news is handed to me.
But we continue on….I now gear up for the final 12 weeks of weekly chemo. Different drug, different side effects, hopefully more of the same positive result. It was great to have my dear friend, Christina, out from Denver for the week. She pampered me with daily acupuncture, mediation music, and her calming presence. Please keep those positive thoughts and prayers coming! They are working on my psyche and working on my cancer!
Posted by JJB at 9:04 AM